1Hi All,
Surgery was Tues to remove the '0' pressure mininav valve and to replace it with the Codman Hakim programmable valve set at '40'. I had thought we where going w a .5 mininav valve as that was what Dr.Bragg had suggested last I knew. Perhaps she changed her mind along w her Partner, not really sure.
The Anesthesiologist was very good, she gave 0 arguments about the pre-surgery steroid dosing, she agreed it should be given atleast 30mins before whereas the prior 2 Anesthesia drs all argued basically with me that it was fine to give it as they where giving other sedation. I give HUGE credit and kudos to her (Dr.Rusy, I think she may have been on my case before, not sure). The Anesthesia Assistant (Resident I think) was on my case last wk to and I liked her as well. My Neuro Endocrine dr emphasizes at every appt how important it is to make sure and be persistent no matter how argumentative some Anesthesia drs get as she has commented numerous times she has some other pts w the same cortisol issue who often have to really be pushy and advocate for themselves for the pre-surgery cortisol dosing time.
As far as surgery I think it was relatively short, they just opened up 2 incisions (side and stomach) to take out the mininav valve and replace it with a valve with more resistance. There has been quite a bit of swelling on the side incision but not really painful other than when I move wrong or try to lay on that side.
I also thankfully was transferred back to the regular Neuro fl Tues night. After the EVD was removed and I was feeling better I had been transferred to the Trauma floor, this wasn't all bad as I knew some of the Nurses who formerly worked on Neuro and had 1 of them + the other that was working stopped by several times. I was definitely glad to be back on Neuro though.
As far as the severe low pressure headaches I was getting prior to Tues surgery those symptoms where pretty much resolved by last night and overnight/this morning I was having the opposite, having higher pressure headaches. I doubt pressures where severely high but I'd be willing to bet the #'s would have been higher.
Nausea meds are definitely great during these periods! During the post-surgery last wk the Nurses used a newer orally disintegrating nausea med I've thought about asking if I could try as Zofran/Ondansetron doesn't always work well.
Dr.Bragg returns Fri so hopefully i'll get a chance to talk to her about all of this. It's kind of disappointing to know i'll likely be going home not feeling great and absolutely certain if we had done the 2nd shunt it would have been better. For whatever reason when we start from scratch with complete brand new shunt systems I tend to feel a TON better.
I am set to receive my enzyme replacement (Aldurazyme) infusion on Fri as well as I may get released so I am hoping to have some of these varying symptoms ironed out but probably not holding my breathe. Today I ended up taking a nap, I didn't think i'd fall asleep but I did for several hours after i'd been up.
Thanks for stopping by, I hope next time I update whenever that is that my body is settled out!
Erica
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